Tuesday, January 29, 2013

Herothon Recap

 Mission Accomplished for our HERO!


Gray and I had a great weekend celebrating our little hero, Keegan.  Gray can now officially say he is a half-marathoner.  He ran well, and I was very happy to be able to run with him, even bringing him in under his goal time.

The weekend did not get off to a great start however.  I took Keegan to get his labs drawn Friday morning, as usual, before dropping him off at my parents' house.  We were assuming that his labs would be pretty stable.  They were not.  It took some finagling and a little extra stress on my mom's part, but she was able to get him to the hospital during the afternoon for some infusions that helped stabilize his bloodwork a bit.  We made it to the airport on time only to find that I had left my wallet at home.  Ack!  Gray sped home and back, and we did a little pre-race sprint through the airport to make the plane.  Then as we are loading into a taxi in San Antonio, I barely hear them calling Gray's name over the loudspeaker.  He had dropped his ID in the baggage claim area.

Did I mention this was the first time we have both left town since before Keegan was born?  Great start.

But we made it, and we started getting excited and inspired for the race on Saturday at the expo.  For a first trip away from the kids, it was reassuring to do so in order to honor Keegan's courage and bravery.

Can you see our notes to K on the O and under "hero"?




And then race day was upon us!



Keegan's godfather, Teague, designed the K's for Keegan logo for us.
He still has a few tweaks to make, but I think it's pretty awesome!
We even got a few "go, Keegan" shout-outs!



Keegan's sign on the Heroes' Mile


Super Dad and Wonder Mom?


 I think we earned this celebratory dinner at Mi Tierra's before going home.
It's probably been 12 years since my last meal there, and I still dream of those tortillas.


So #1 of my 13 in 2013 is on the books.  My Achilles is very, very angry.  It was a constant reminder to me during the race of the challenges, pain, and triumphs Keegan has endured over the last five years.  He has never given up, not once, no matter how difficult things have been.  I hope that he will see the ways we honor his courage and continue the hero's battle.

Wednesday, January 23, 2013

Day of Days

Really it's been a day of days every day around here the last few days.  Whew.

Last Friday, Keegan's labs showed he might have been reacting to something.  Most notably, his white count was up for him (still low but higher than his norm), and his platelets had dropped significantly.  Two predictors of viral exposure for Keegan.  By Friday afternoon, the entire right side of his face was bright red and warm to the touch.  His heart rate was up, and we were just sure we would be in the ER by morning.

Well, we weren't.  He never spiked a fever, and by morning, his heart rate was back down.  However, both cheeks were red, and it looked like his lips were severely chapped.  Then, the diarrhea came, and the emotional avalanche started.  And kept going and going and going.  It wasn't until Sunday that we realized he had Fifth Disease or "slapped cheek syndrome".  Almost every child has had this at some point.  I'm pretty sure Keegan has had it before...maybe it was Audrey.  I'm not sure.  Anyway, once the rash appears, the child is generally not contagious anymore.  Audrey never showed any signs of it this time, and Keegan's rash is almost completely gone today.

The last few days have been rough for us all.  While Keegan could still have a full flare in response to this virus, it seems he has been having all the other symptoms of a flare without the fever - fatigue, GI issues, and the emotional roller coaster.  It gets really old, really fast.  Deep breath.

At any rate, it seems to be subsiding now.  Which is good because we have a pretty big weekend coming up with Gray's first half marathon!  He is feeling good and ready to go.  I'm supposed to run with him and pace him, but I can't say I'm feeling as well.  My Achilles started aching again after my long run last week.  So fingers crossed that (1) Keegan stays on the "getting better" track, (2) Gray does really well in his race, and (3) that I am able to join him on his big day.

(Wow, looking back at that last sentence, I'm extremely thankful that those are our only prayer requests of the week!  Wow.  Now that, my friends, is something to post about...no matter how rough the week has been!)


Wednesday, January 16, 2013

Ladybug Tails


You may call them "pig tails".  My mom called them "bunny bunches".  For our little Ladybug, we're calling them "ladybug tails".  Audrey fought us about rubber bands in her hair until this week, and she finally has enough hair to kinda sorta make them work.  I didn't think she could get cuter, but I'm pretty sure this is over the top!

I don't have much else to update about right this minute.  We have been busy making up therapy sessions, getting back into the swing of school, and trying to do some first-of-the-year clean-up.  I have 5 years of kids' clothes I'm trying to sell.  A little overwhelming!  Keegan is recovering well from his cath and black eye.  We did receive word that the remaining genetic labs came back, and we have scheduled another team meeting for February 5th with all the specialists who see Keegan.  We will update about that once decisions have been made.

A little of a whirlwind update, but it's about all I have for right now.  That smile on Audrey's face was enough for an update of itself!  More soon.  Thanks for continued prayers for our Bug.

Thursday, January 10, 2013

0R

NO REJECTION!!  Woo-hoo!

Give thanks to the Lord, for He is good; His love endures forever!
1 Chronicles 16:34


*Forgive me for not updating sooner.  We received the good news last night.  We've been a tad busy.  Keegan had an allergic reaction from the cath and broke out in hives and ran a slight temp, probably from the dye used for the angiogram.  We have been giving IV benadryl and tylenol, and it seems to have subsided as of tonight.  He is having a little bit more bruising than usual, due to the steroids and MAS affecting his clotting abilities.  Overall, he is doing ok though, and we are eternally grateful.  Thank you again for all your prayers.  We couldn't ask for more.

Tuesday, January 8, 2013

Transplant Annual

Keegan's annual went well today.  His heart looks great so far.

We started the day off with an echo, an EKG, and labs.  Keegan made it to pre-op for his cath and biopsy around 11am.

That is one black eye!  

His heart pressures and coronaries were stable from last year.  He came out of surgery around 12:15pm.  Then the hard part of the day started - four hours of lying flat on his back and still.  The doctor goes in through the femoral artery in his groin in order to do the arterial angiogram.  Because of the pressure there, you have to give the artery time to clot off before you sit up.  Fun times.

Anyway, we are on our way home and to pick up Audrey right now!  Biopsy results should be back tomorrow, but we are anticipating no rejection.  Thank you for your prayers today.  Keep them up for one more night for that big 0R biopsy result!  

Monday, January 7, 2013

Mercy, Monday

Mercy.  I plead mercy from this Monday.  Thankfully, it's almost over.

The first Monday "back to business" after a holiday is never smooth.  Get the kids up earlier than they had been getting up over the break (oh so happy).  Give Keegan his 10 morning g-tube medications and 1 IV medication.  Get both kids dressed.  Rush them through breakfast.  Rush Audrey to school.  Criss-cross town to Keegan's speech therapy appointment.  Back to the house for ABA therapy.  Yadda yadda yadda.

The day started going wrong too soon.  Second medication in blocked his g-button up like a cork.  Meds exploded on me, the carpet, Keegan.  Had to cancel Keegan's speech therapy in lieu of an emergency button replacement so he could receive his time-sensitive medications.  Truncated story...it was replaced, and we were back home ready for ABA therapy.

The pre-medication we gave Keegan to help him chill out during the button replacement (remember, taking his button out is kind of like taking a giant earring out that extends from outside his belly all the way into his stomach) made him a little loopier than usual, for longer than usual.  He got a little off-balance during an exciting VeggieTales DVD, and this happened:

Boy meets coffee table.
I'm sure it will look even better tomorrow.

He was extremely emotional the rest of the day.  My mom picked up Audrey at 4pm to watch her overnight since we have to be at the hospital super early in the morning.  I still hadn't been to the grocery store for basic needs.  I came home a little after 5:30pm to find Keegan asleep on the couch.  His nurse said he basically cried himself to sleep.  This wouldn't be a problem, except that Keegan does NOT nap when he feels well.  Ever.  Emotional wreck + excessive sleepiness usually = flare.  We don't think it is a concussion based on how low the impact was on his face.  I've already spoken with the transplant team, and they are going to take some MAS labs onto the rest of his labs for tomorrow.

Which brings me to tomorrow...Keegan's annual transplant work-up with heart catheterization, angiogram, and biopsy to check for rejection.  Echo, EKG, x-ray, and labs too.  It usually would be around mid-September, on the anniversary of his transplant.  However, we pushed it back last year since he was in the ICU in Boston on his transplant anniversary.  From now on, it will remain in January unless something else pushes it back again.

So, if you could say a few prayers for Keegan's safety and a good report tomorrow, we would appreciate it.  It will be a long day, and after today, that's going to be asking a lot.  We will update tomorrow as we know more.  Thank you once again!  

And now, Mama needs some wine! ;)

Thursday, January 3, 2013

13 in 2013

Please pardon this brief interruption from our normal blogging program.  I promise it will come full circle.  :)

I made a commitment (that I hope you agree I have mostly stuck to) a few months ago when I resumed writing here that the focus of this blog would remain, as was it's original intention, to provide updates on Keegan's medical condition.  However, it also is a documentation of our life as a family and our dedication to causes dear to our hearts, mainly organ donation and congenital heart defects.  I suppose and suspect that autoimmune disorders will be joining those ranks this year, but clarity on that issue is still in the works.  (What, you thought when the lab promised we would have results before the end of the month, they meant it? Ha ha ha.  Ahem.)

The last purpose of this blog was to be a place to process emotions and provide support.  Today's little post falls into the latter category, as it were.  Back in April, I wrote a post about my somewhat inglorious return to running.  Despite being set back by gallbladder removal surgery, I managed to have a good return to my sport over the summer and early fall, even maintaining it throughout Keegan's inpatient stays and a nagging pain in my foot.  The nagging pain turned into a torn Achilles and severe inflammation in my peroneal tendon that put me in a cast, on crutches, and kept me from completing the Dallas half-marathon last month.  I made a promise then that I would run another half as soon as possible in order to complete my commitment to Team Beads of Courage and all of you who donated to Texas Scottish Rite Hospital for Children on Keegan's behalf.

On Christmas Day, I had been in the cast for the full 2 weeks post-crutches.  I went straight to the gym that morning when Gray got to the hospital for my first run in 3 weeks.  Only to end up with continued pain and a seriously broken heart.  The pain wasn't debilitating, but it was nagging, which was more than what I was expecting at that point.  I took one more week off of running, partly because of my ankle and partly because of a sinus infection straight from hell.  Seriously kids, it was nasty.  Ironically, the steroid shot in my booty for the sinus infection may have had the added benefit of helping my foot over the healing hump!

But now I am ready to head into 2013 fresh and healthy.  My top priority of the year is to dive back into training smart and injury-free.  Running is a sport I truly love, and racing has taken on a new appeal to me now that I am not playing competitive team sports anymore.  (It doesn't hurt that I'm now in an age group where I can win.  Score one for aging!  Maybe in 10 more years, I can qualify for Boston.)  I've found a chiropractor and physical therapist that are working with me on this front, and I've learned more about how to strengthen, stretch, and prevent the same injury.  It's actually my right hip that causes my left foot/knee issues, but that's another story for another time.

Another thing I love about racing is the ability to bring awareness for our causes and fundraising for organizations dear to our hearts.  To that effect, I have committed to the 13 in 2013 Challenge!  Now this should be interesting!


The goal of this challenge is to run 13 races in 2013.  (Oh, and I kinda said I would complete a full marathon this year. Just for fun, ya know!)  Luckily, Jill and Jen will be hosting a few virtual races to make it easier because race entry fees aren't exactly cheap these days.  I'm hoping Keegan will stay stable and healthy through the rest of January so I can join Gray in the Herothon half marathon on January 27.  That will be a way to meet knock out a January race and make up for the missed Dallas half.  How I feel the next three weeks will make a big difference, but right now, I think I will slow down to run with Gray in order to pace him and take it easy.  I'm so proud of him for sticking to his training plan, and it will be nice to spend the time together.  I will have time to race at my typical pace and set some speed goals later in the year.  Then, I'm going to run the Hot Chocolate 15K on February 9.  The Cowtown marathon is on my birthday this year, but our budget will probably keep me from that one.

I promised this post would come full circle.  Here's how this applies to Keeg and this blog:

I will be picking several races throughout the year where we can have a K's for Keegan team presence, that benefit organizations important to Keegan (such as Children's, Scottish Rite, Make A Wish, etc), and for one or two, we will fundraise.  Obviously, I will always have my K's for Keegan tshirt on that encourages others to register as organ donors, and for bigger races, I will continue to carry beads for Team Beads of Courage.  I haven't planned out a full racing calendar yet, but the first K's for Keegan race will be the Firefly Run 5K in Plano on March 23, 2013.  This is a night race that benefits Children's Medical Center and is super fun.  I will post more details as I figure it all out.

Well, this was a super long entry that was slightly off topic.  I will return to regular posts after this and won't bother any readers here with too much running talk the rest of the year.  If we organize a team or choose to fundraise, you'll hear about it.  If not, I will keep it to myself.  And just to wrap it up with some Keegan news, he is still home and doing better with just a few more days of IV antibiotics.  His annual transplant cardiac work-up is scheduled for January 8.  Once again, we thank you for every prayer and bit of support you provide us on a daily basis.  You keep us running!  ;)

Tuesday, January 1, 2013

Christmas - Take 2

Our special "Christmas" morning was fun and relaxed.
Exactly what we had hoped for...



















Here's hoping for more fun in the new year!
Welcome 2013!